Park was born with a mutated gene that caused constant inflammation in her gastrointestinal tract. Much of her early life was spent in hospitals where she was treated for inflammatory bowel disease, meningitis, colitis and rheumatoid arthritis in her knees, wrists and hips.
She was in constant pain, with bouts of severe vomiting, chronic fevers and diarrhea, and her outlook was bleak until doctor’s discovered her rare condition in 2010 after sequencing her DNA.
Doctors at the Hospital for Sick Children in Toronto performed a bone marrow transplant on the young girl in July 2010, hoping the new DNA would allow her body to halt the constant inflammation in her gastrointestinal tract.
Park’s case was the second in the world with such a mutation, and there are now just 20 cases on record. Park was the first to be cured through a stem cell transplant.
Now symptom-free, Park and her family moved home to Gillams from Barrie, Ont., several months ago.
Her mother, Penny Lambert, said after a nearly five-year ordeal which saw she and her husband, Trevor Park, lose their vehicles and jobs in order to care for their daughter, having the chance to celebrate Christmas with their extended family has been a blessing.
While she seems to be improving more each day, her mother said the Newfoundland climate has done wonders for Brygette’s health.
“Up there, she couldn’t stand the humidity so she was in the house a lot,” Lambert said. “Plus, its so over-populated, but here she can open the door and go outside with her dog ...so its a huge difference. She’s thriving here.”
Getting the chance to play with her beloved dog, Bowser, has helped her recovery as she learns to interact with other children for the first time.
Lambert said Bowser, a present given to her after her stem cell procedure, has already become a vital part of the family.
“It was instant ...he’s a protector,” she said. “He’s trained so he doesn’t lick or bark. He couldn’t lick her because she’s immune-suppressed. He’s constantly with her and if he doesn’t see her, he cries.”
Now basically a normal five-year-old, Park enjoys swimming, building snowmen and playing with her friends.
She is aware that she was saved by a donor from Manitoba named Bruce Penner, a man selected since he was the youngest perfect match out of a handful discovered through a DNA database.
The family have been in contact with Penner, and Lambert would like to eventually meet the man Brygette already credits for saving her life.
Brygette’s case has led to the formation of Neopics (The international Early Onset Paediatric IBD Cohort Study), which brings international pediatric gastroenterologists together from around the world to study and develop new treatments for children and infants with similar conditions.
“They are helping kids all over the world now because of what they’ve discovered from Brygette,” Lambert said. “She suffered a lot but... to know that she survived and what she went through is helping lots of people, that makes her that much more special.”
Lambert describes her daughter as a “grateful little girl”, one who’s mature for her age given what she’s endured, and the fact that she hasn’t had much chance to interact with children her age.
That’s all changing now, but Brygette’s maturity recently came through when she was asked to make a wish during her birthday party on Dec. 21 at the community hall in Gillams.
“She put her hands together, said ‘Thank you God’ and blew her candles out. What five-year-old does that?” she said. “She feels free because she doesn’t have a line, or bags or ports anymore. She’s getting into little girl things like changing her clothes a lot... she likes to be a princess.”
For more information about Neopics, visit: www.neopics.org
jbennett@thewesternstar.com
Twitter: WS_JamieBennett
